Indiana Hemophilia and Thrombosis Center, Inc., Indianapolis, IN, USA.
Health Promot Pract. 2022 Jul;23(4):560-562. doi: 10.1177/15248399211024169. Epub 2021 Jul 7.
Sickle cell disease (SCD) was once a disease of childhood because of a limited life expectancy. Due to medical advances, it is now common for people with SCD to live into adulthood. Funding and resources for adults with SCD, however, remain limited. Adult patients would benefit from increased access to medical care, mental health care services, and workforce development. The Indiana Sickle Cell Consortium, a group of medical providers and community-based organizations, worked closely with people living with SCD and their family members to create a campaign advocating for state funding for programs for adults with SCD. This campaign culminated with the passage of a bill that provides $250,000 in funding for program development for adults with SCD. The bill also directs the Indiana Department of Health to carry out a needs assessment for people with SCD in Indiana. However, continued efforts are needed to reduce health disparities for people with SCD. The Indiana Sickle Cell Consortium will continue advocacy efforts in future legislative cycles and bring attention to the health inequities that affect people with SCD.
镰状细胞病（SCD）曾是一种儿童期疾病，因为其预期寿命有限。由于医疗技术的进步，现在患有 SCD 的人通常可以活到成年。然而，为 SCD 成年患者提供的资金和资源仍然有限。成年患者将受益于更多的医疗保健、心理健康服务和劳动力发展机会。印第安纳镰状细胞联盟是一组医疗服务提供者和社区组织，与 SCD 患者及其家属密切合作，发起了一场倡导为 SCD 成年患者提供项目资金的活动。这场运动最终促成了一项法案的通过，该法案为 SCD 成年患者的项目发展提供了 25 万美元的资金。该法案还指示印第安纳州卫生部对印第安纳州的 SCD 患者进行需求评估。然而，仍需要继续努力减少 SCD 患者的健康差距。印第安纳镰状细胞联盟将在未来的立法周期继续倡导工作，并关注影响 SCD 患者的健康不平等问题。
